Archive by Author

Estimating the Prevalence of Autism Spectrum Conditions in Adults: Extending the 2007 Adult Psychiatric Morbidity Survey

1 Feb

You may recall that a couple of years ago a study came out looking at the prevalence of autism in adults in the United Kingdom. They found a prevalence of about 1%, the same as in children.

There’s now a follow up study. The press release is below. The study can be found here. I hope to have the time to go into this in more detail in the next couple of days.

University of Leicester researchers lead on new autism study published today
Britain’s first adult autism survey reveals previously ‘invisible’ group with autism

New research on autism in adults has shown that adults with a more severe learning disability have a greater likelihood of having autism.

This group, mostly living in private households, was previously ‘invisible’ in estimates of autism.

Dr Terry Brugha, Professor of Psychiatry at the University of Leicester, led research on behalf of the University for the report Estimating the Prevalence of Autism Spectrum Conditions in Adults: Extending the 2007 Adult Psychiatric Morbidity Survey, which has today been published by the NHS Information Centre.

The report involved a survey of adults from learning disability registers in Leicestershire, Lambeth and Sheffield between August 2010 and April 2011.

Today’s report presents findings from a new study based on a sample of people with learning disabilities living in private households and communal care establishments. The findings are combined with information from the Adult Psychiatric Morbidity Survey (APMS) 2007, previously published by the NHS Information Centre, which included research on autism also led by Dr Brugha.

Dr Brugha, also a consultant psychiatrist working in the NHS with the Leicestershire Partnership NHS Trust, said: “We were surprised by how many adults with moderate to profound learning disability had autism because previous estimates pointed to lower rates in this group. Because they form a very small part of the adult population, when we added these new findings to the rate we had previously found in adults living in private households, and able to take part in our national survey in 2007, the overall percentage of adults in England with autism did not increase significantly over our 2007 estimate of 1%.”

“Our finding that about 60% of men with profound learning disabilities and 43% of women with profound learning disabilities have autism has never been shown previously. It may also seem surprising how many live at home with parents or carers who provide 24 hour care and shoulder a considerable burden: 42% of men and 29% of women with severe learning disabilities living with family members and in other private households have autism. Taken together with the 2007 survey findings this means that most adults with autism live in private households, and before these two surveys they remained largely invisible”.

Dr Brugha added “This new information will be of particular importance for those who plan and provide services to support those with learning disabilities. In March 2010, the Government published a national strategy for autism and guidance for the condition, with the view to improving the quality of services provided to adults with autism in England. Such improvements can only be achieved if the number of people with recognised and unrecognised autism is quantified. The strategy gave special emphasis to the need to train staff who have responsibility for identifying people with autism and their care. It will be vital to repeat such studies in future years in order to make sure that the national strategy is working effectively.”

Sally-Ann Cooper, Professor of Learning Disabilities at the University of Glasgow, who also contributed to the latest study commented: “Until now routine statistics have not been gathered on the numbers of people with learning disabilities who also have autism leaving this as a hidden problem. Our study clearly shows that the more severe to profound an adult’s learning disability is, the more likely they will be found to have autism if actually assessed.”

Mother Jones: Rep. Dan Burton’s Legacy: Lots of Sick Kids

1 Feb

Dan Burton, representative to the U.S. House of Representatives from Indiana announced today he would not seek re-election this year. Mother Jones has an article to mark the end of Dan Burton’s career in congress: Rep. Dan Burton’s Legacy: Lots of Sick Kids. The link says a lot “rep-dan-burton-goodbye-and-good-riddance”.

Stephanie Mencimer of Mother Jones starts out:

So Rep. Dan Burton (R-Ind.) is finally retiring, after two decades in Congress. He’s got a notable record of craziness, having doggedly pursued President Bill Clinton during the Monica Lewinsky scandal while knowing full well he’d had an affair himself and even fathered a child out of wedlock. He famously claimed to have shot up a “head-like object” (likely a melon or a pumpkin) to try to re-create the alleged “murder” of former Clinton deputy White House counsel Vince Foster, who committed suicide. But Burton doesn’t get enough credit for what may be his lasting legacy: helping turn Americans away from life-saving childhood vaccines.

Representative Burton has an autistic grandchild. Mr. Burton is of the belief that vaccines were causal in that autism. If you’ve read David Kirby’s book, “Evidence of Harm, Mercury in Vaccines and the Autism Epidemic: A Medical” you know that Rep. Burton is a major figure in that narrative.

Rep Burton helped promote Andrew Wakefield’s ideas, including a hearing held in 2000. Mr. Wakefield’s testimony is not exactly what I would call accurate. As is now well known, Mr. Wakefield was financially supported by attorneys seeking to prove a link between the MMR vaccine and autism. When Rep. Burton asked him about financial support, here’s how Mr. Wakefield responded:

Mr. Burton. Who funded your study, Dr. Wakefield?
Dr. Wakefield. We did. We have a small charitable
contribution, but—-
Mr. Burton. A charitable organization did; I see.
Dr. Wakefield. We found it a little difficult to get
funding—-

Mr. Burton cut Mr. Wakefield off at this point, addressing another speaker at the hearing. “A charitable contribution” is a rather odd way to describe money from attorneys. Mr. Burton held at least six hearings on vaccines. That is not a problem. However, the evidence was going from weak to strongly against him over the years.

Mr. Burton has thankfully been more quiet on the issue in his recent years in office. Still, I’m with Mother Jones on this. Good Bye and Good Riddance.

Assessment of Studies of Health Outcomes Related to the Recommended Childhood Immunization Schedule

31 Jan

The U.S. Institutes of Medicine (IOM) will hold a meeting to discuss the feasibility of studying health outcomes in vaccinated and unvaccinated children. Health Outcomes Related to the Recommended Childhood Immunization Schedule will be held on February 9.

Activity Description

The IOM will conduct an independent assessment surrounding the feasibility of studying health outcomes in children who were vaccinated according to the CDC recommended schedule and those who were not (e.g. children who were unvaccinated or vaccinated with an alternate schedule). The IOM will review scientific findings and stakeholder concerns related to the safety of the recommended childhood immunization schedule. Further, the IOM will identify potential research approaches, methodologies, and study designs that could inform this question, including an assessment of the potential strengths and limitations of each approach, methodology and design, as well as the financial and ethical feasibility of doing them. A report will be issued in mid-2012 summarizing the IOM’s findings and conclusions.

Here is the draft agenda:

Draft Agenda
11:00-12:00 OPEN SESSION

11:00-11:15 Welcome and Overview
Ada Sue Hinshaw, Ph.D., R.N.
Committee Chair

11:15-11:35 Presentation of the Charge from the National Vaccine Program Office
Bruce Gellin, M.D., M.P.H.
Deputy Assistant Secretary for Health
Director, National Vaccine Program Office, US Department of
Health and Human Services

11:35-12:00 Review of IOM’s Committee to Review Adverse Effects of Vaccines
Ellen Wright Clayton, J.D., M.D.
Chair of the IOM Committee to Review Adverse Effects of
Vaccines
Craig-Weaver Professor of Pediatrics, Vanderbilt University

12:00-1:00 CLOSED SESSION –WORKING LUNCH

1:00-5:00 OPEN SESSION

1:00-1:20 National Vaccine Information Center Perspectives
Barbara Loe Fisher
Co-Founder & President, National Vaccine Information Center

1:20-1:40 Provider Perspectives
Gary Freed, M.D., M.P.H.
Professor, Department of Health Management and Policy,
University of Michigan School of Public Health
Director, Division of General Pediatrics
The Percy and Mary Murphy Professor of Pediatrics and Child
Health Delivery

1:40-2:00 The Use of Clinical Trials for Childhood Vaccines
Susan Ellenberg, Ph.D.
Professor of Biostatistics and Associate Dean for Clinical
Research
Perelman School of Medicine at the University of Pennsylvania

2:00-2:20 Ethical Issues in Clinical Trials
Robert (Skip) Nelson, M.D., Ph.D.
Senior Pediatric Ethicist/Lead Medical Officer, Food and Drug
Administration

2:20-2:40 BREAK

2:40-3:05 National Center for Immunization and Respiratory Diseases (NCIRD)
Centers for Disease Control and Prevention (CDC)
Melinda Wharton M.D., M.P.H.
Deputy Director, NCIRD, CDC
Captain, US Public Health Services

3:05-3:25 Immunization Safety Office (ISO) CDC
Frank DeStefano, M.D., M.P.H.
Director, ISO, CDC

3:25-3:45 Data and Approaches in National and International Immunization Studies
Saad Omer, Ph.D., M.P.H., M.B.B.S
Assistant Professor, Hubert Department of Global Health
Epidemiology, Emory University Rollins School of Public Health
Assistant Professor, Emory Vaccine Center

3:45-4:05 Immune Profiling Research
Chuck Hackett, Ph.D.
Deputy Director, Division of Allergy, Immunology, and
Transplantation
National Institute of Allergy and Infectious Disease

4:05-5:00 OPEN SESSION* — Opportunity for Attendee Comments

5:00 ADJOURN

Joint ASAN-Autism Society Statement on DSM 5

31 Jan

Below is a joint statement by the Autistic Self Advocacy Network and the Autism Society of America on the DSM-5.

Dear Friend,

As two national organizations committed to working to empower the autism and Autistic communities today and into the future, the Autism Society of America and the Autistic Self Advocacy Network issue the following joint statement regarding the definition of Autism Spectrum Disorder within the DSM-5:

The autism spectrum is broad and diverse, including individuals with a wide range of functional needs, strengths and challenges. The DSM-5’s criteria for the new, unified autism spectrum disorder diagnosis must be able to reflect that diversity and range of experience.

Over the course of the last 60 years, the definition of autism has evolved and expanded to reflect growing scientific and societal understanding of the condition. That expansion has resulted in improved societal understanding of the experiences of individuals on the autism spectrum and their family members. It has also led to the development of innovative service-provision, treatment and support strategies whose continued existence is imperative to improving the life experiences of individuals and families. As the DSM-5’s final release approaches and the autism and Autistic communities prepare for a unified diagnosis of ASD encompassing the broad range of different autism experiences, it is important for us to keep a few basic priorities in mind.

One of the key principles of the medical profession has always been, “First, do no harm.” As such, it is essential that the DSM-5’s criteria are structured in such a way as to ensure that those who have or would have qualified for a diagnosis under the DSM-IV maintain access to an ASD diagnosis. Contrary to assertions that ASD is over diagnosed, evidence suggests that the opposite is the case – namely, that racial and ethnic minorities, women and girls, adults and individuals from rural and low-income communities face challenges in accessing diagnosis, even where they clearly fit criteria under the DSM-IV. Furthermore, additional effort is needed to ensure that the criteria for ASD in the DSM-5 are culturally competent and accessible to under-represented groups. Addressing the needs of marginalized communities has been a consistent problem with the DSM-IV.

Individuals receive a diagnosis for a wide variety of reasons. Evidence from research and practice supports the idea that enhancing access to diagnosis can result in substantial improvements in quality of life and more competent forms of service-provision and mental health treatment. This is particularly true for individuals receiving diagnosis later in life, who may have managed to discover coping strategies and other adaptive mechanisms which serve to mask traits of ASD prior to a diagnosis. Frequently, individuals who are diagnosed in adolescence or adulthood report that receiving a diagnosis results in improvements in the provision of existing services and mental health treatment, a conceptual framework that helps explain past experiences, greater self-understanding and informal support as well as an awareness of additional, previously unknown service options.

Some have criticized the idea of maintaining the existing, broad autism spectrum, stating that doing so takes limited resources away from those most in need. We contend that this is a misleading argument – no publicly funded resource is accessible to autistic adults and children solely on the basis of a diagnosis. Furthermore, while the fact that an individual has a diagnosis of autism spectrum disorder does not in and of itself provide access to any type of service-provision or funding, a diagnosis can be a useful contributing factor in assisting those who meet other functional eligibility criteria in accessing necessary supports, reasonable accommodations and legal protections. As such, we encourage the DSM-5 Neurodevelopmental Disorders Working Group to interpret the definition of autism spectrum disorder broadly, so as to ensure that all of those who can benefit from an ASD diagnosis have the ability to do so.

The Autism Society and Autistic Self Advocacy Network encourage other organizations and groups to join with us in forming a national coalition aimed at working on issues related to definition of the autism spectrum within the DSM-5. Community engagement and representation within the DSM-5 process itself is a critical component of ensuring accurate, scientific and research-validated diagnostic criteria. Furthermore, our community must work both before and after the finalization of the DSM-5 to conduct effective outreach and training on how to appropriately identify and diagnose all those on the autism spectrum, regardless of age, background or status in other under-represented groups.

Sincerely,
Ari Ne’eman
President of
Autistic Self Advocacy Network
aneeman@autisticadvocacy.org

Scott Badesch
President of
Autism Society
sbadesch@autism-society.org

Generation Rescue’s tax form 990 for 2010

31 Jan

Generation Rescue’s tax forms (form 990) for 2010 have been made publicly available.

2010 was the second highest year financially for Generation Rescue. Here are their yearly totals:

2006: $318,695
2007: $425,317
2008: $1,185,255
2009: $623,597
2010: $1,078,471

GENERATION RESCUE IS DEDICATED TO RECOVERY FOR CHILDREN WITH AUTISM SPECTRUM DISORDERS BY PROVIDING GUIDANCE AND SUPPORT FOR MEDICAL TREATMENT

The largest expense was for “research”: $307,439. The description is not very detailed:

GR CONTINUES ITS COMMITMENT TO DISCOVERING THE CAUSES OF AUTISM SPECTRUM DISORDERS AS A MEANS OF IMPROVING TREATMENTS AND QUALITY OF LIFE, WHILE WORKING TOWARDS A PREVENTION AND A CURE. ANGELS DONATE THEIR TIME TO ANSWER QUESTIONS, GIVE GUIDANCE AND PROVIDE RESOURCES FOR FAMIILIES STARTING OUT ON THEIR OWN.

More on this later.

Other expenses? Marketing and Awareness, for one: $135,128

MARKETING & AWARENESS
GR IS DEDICATED TO SPREADING AWARENESS AND INFORMATION ABOUT AUTISM TO THE POPULATION AT LARGE, TO ENSURE THE UNDERSTANDING AND SUPPORT FOR THE DISORDER. GR WORKS CLOSELY ON A GRASSROOTS AND NATIONAL LEVEL TO ENGAGE FAMILIES IN THE PROCESS.

Rescue Family Grant Program: $96, 431

GR’S RESCUE FAMILY GRANT PROGRAM PROVIDES AUTISM TREATMENT SUPPORT TO INDIVIDUALS AND FAMILIES AFFECTED BY AUTISM SPECTRUM DISORDERS. GR PROUDLY PROVIDES FAMILIES WITH THIS UNIQUE AUTISM TREATMENT PROGRAM, WHICH MAY NOT OTHERWISE BE COVERED BY SCHOOL DISTRICTS, COUNTY PROGRAMS, INSURANCE OR OTHER GRANT-GENERATING ENTITIES.

Other program services: $328,660.

You may recall that this year Generation Rescue teamed up with AutismOne to produce the AutismOne conference. They made the conference “free” to attendees (with a $25 fee). Generation Rescue put out $76,467 to support the conference. Someone is obviously paying (exhibitors? Speakers?), Generation Rescue made $38,883 on the conference. Compare this with their comedy event where they spent $98,422 to make $15,327. Autism One is a much better deal for them.

Remember those research expenses mentioned above? I assume that this charge is included there: “Strategic Autism Initiative” got $100,000 “for researching the causes of autism:”. What’s the Strategic Autism Initiative? Simply put: Andrew Wakefield. That’s the organization he created after leaving Thoughtful House. Been wondering how Andrew Wakefield is paying the bills since losing that job? Well this gives you a big clue.

(For comparison, their “Family Grant” program received less money: $93,122 for 111 recipients.)

Under compensated board members, officers, etc., they list:

Jenny McCarthy, President, Director (10 hours/week, no pay)
Jonathan B Handley, Director (10 hours/week, no pay)
Lisa Handley, Director (10 hours/week, no pay)
and
Candace MacDonald, Executive Director (40 hours/week, $128,613)

Total in salaries and other compensation $260,569. (in 2009, this was $364,686)

Generation Rescue’s mission statement for 2010?

GENERATION RESCUE (GR) IS DEDICATED TO RECOVERY FOR CHILDREN WITH AUTISM SPECTRUM DISORDERS BY PROVIDING GUIDANCE AND SUPPORT FOR MEDICAL TREATMENT TO DIRECTLY IMPROVE THE CHILD’S QUALITY OF LIFE FOR ALL FAMILIES IN NEED

This has been evolving.

2009:

GENERATION RESCUE,INC IS AN INTERNATIONAL MOVEMENT 0F SCIENTISTS AND PHYSICIANS RESEARCHING THE CAUSES AND TREATMENTS FOR AUTISM, ADHD, AND CHRONIC ILLNESS WHILE PARENT-VOLUNTEERS MENTOR THOUSAND OF FAMILIES IN RECOVERING THEIR CHILDREN

2008:

CONTINUING RESEARCH, EDUCATION AND DISSEMINATION OF INFORMATION TO THE GENERAL PUBLIC AND MEDICAL PROFESSIONAL RELATING TO MERCURY TOXICITY AND ITS EFFECT ON CHILD DEVELOPMENT

(Generation started out as a major proponent of the idea that autism was a misdiagnosis for mercury poisoning)

One might notice that the “research” budget is significantly higher than that allocated to Mr. Wakefield’s organization. They allocate $307,439 for research. Compare this to 2009, when their support of research appears to be a single entry of $30,000 given to the HEAL Foundation.

$100,000 is going to Mr. Wakefield. Where is the other $208,439 going? Generation Rescue at one point felt they could do a vaccinated/unvaccinated study for $809,721. At that time it was proposed as a 2 year study. Is it in the works?

Does MMR vaccine travel in time?

27 Jan

The news that the diagnosis of autism may be brought forward is primarily of importance because it may help identify children who will require specialised support. However, it is also interesting because it breaks the co-incidental temporal association that has been part of the reason the MMR vaccine-autism hypothesis gained traction. Since the behavioural cues for autism can’t be picked up well until after one year of age, parental concern about their child being different and autism diagnoses rose after administration of the MMR vaccine. This had unfortunate consequences for the perception of MMR vaccine’s safety.

Elsabbagh et al examined “brainwaves” (event-related potentials – ERPS) of babies with a familial risk of autism when presented with pictures of faces either gazing at the baby or away from the baby. Those children who went on to develop autism diagnoses had differing ERPs.

Although the evidence of fraud, failure to find epidemiological evidence to back-up Wakefield’s claims, and failure to find measles RNA that would have supported Wakefield’s work were enough to bury any scientific case for the MMR Vaccine-autism hypothesis, the fact that autism may now be diagnosed before the MMR vaccine lays a nice wreath on top.

Not all parents whose children developed autism blamed MMR vaccine, some parents were already aware of a “difference” about their child before MMR vaccine, but it is understandable how some parents would have made the connection with the vaccine. After all, it is a key part of how clinicians make connections between a drug and adverse event, and is a strong element of assessing causality (see Bradford-Hill criteria).

The causation in the MMR vaccine debacle was neatly illustrated in an article from Prescriber [Registration required] written by Paula McDonald (a former Consultant in Communicable Disease Control).

Some of these syllogisms may be plausible to some patients

Aristotle’s concept of syllogisms, says if certain prepositions are met, something distinct will arise from necessity. However, he also noted false syllogisms (In the UK we have an entire publication devoted to generating them, called the Daily Mail). McDonald’s figure illustrates the usual example of the horse being classified as a cat, along with the example of teddy bears and MMR vaccine causing autism.

You could replace the teddy bears with Peppa the Pig, or some other Greenfieldian scare. However, it sounds more convincing with vaccines, afterall you are introducing foreign material into a healthy child (and vaccines do cause adverse events sometimes).

Convincing people a false syllogism is wrong is a lot harder, than pointing out that A could not have caused B, because B arose months before A happened. Temporal associations are how we make sense of the everyday world. We don’t blame tripping up on a kerb on the beer we were going to have in the pub later that night.

Barring a Skynet conspiracy to send Terminators with MMR vaccine back in time to cause autism, this looks like a useful point to make to parents concerned about the risk of autism with MMR vaccine. Quite what the anti-vaccination groups will do, like the UK JABS cult, is interesting. Perhaps they will move to attack other vaccines given earlier, such as meningitis C or diptheria? Alternatively, they may look to the misapplication of physics, perhaps taking comfort in the news that neutrinos may have travelled faster than light, as their comrades-in-arms the homeopaths did.

Cross posted at Black Triangle.

Infant Neural Sensitivity to Dynamic Eye Gaze Is Associated with Later Emerging Autism

27 Jan

A study out today is causing much discussion. Infant Neural Sensitivity to Dynamic Eye Gaze Is Associated with Later Emerging Autism is by researchers from the UK, Canada and Australia:

1 Centre for Brain and Cognitive Development, Birkbeck College, University of London, London WC1E 7HX, UK
2 Department of Psychiatry, McGill University, Montreal, Quebec H3A 1A1, Canada
3 Olga Tennison Autism Research Centre, School of Psychological Science, La Trobe University, Bundoora, Victoria 3086, Australia
4 Centre for Research in Autism and Education, Institute of Education, University of London, London WC1H 0AL, UK
5 Institute of Psychiatry, King’s College London, London SE5 8AF, UK
6 Autism Research Centre, University of Cambridge, Cambridge CB2 8AH, UK

In Study finds early signs of autism in baby brains, Fox News and Reuters report the study:

Children who develop autism already show signs of different brain responses in their first year of life, scientists said on Thursday in a study that may in the future help doctors diagnose the disorder earlier.

British researchers studied 104 babies at 6 to 10 months and then again at 3-years-old, and found that those who went on to develop autism had unusual patterns of brain activity in response to eye contact with another person.

The BBC in their story Autism: Brainwaves ‘show risk from age of six months’, notes:

Prof Johnson said: “It is important to note it is not a 100% predictor. We had babies who flagged up warning signs who did not develop autism.”

There were also babies who did develop autism who had low-risk brainwaves. The test would need to be more accurate before it was used routinely.

And this is a big reason I’d like to see the actual study. How accurate was this measure?

I would point out that there are children who show very clear behavioral signs of autism before age 1, something which the news stories don’t seem to be capturing.

Autistica, who helped fund the research, included this in their comment on the study:

In their first year of life, babies who will go on to develop autism already show different brain responses when someone looks at them or away. Although the researchers are careful to say that the study is only a first step toward earlier diagnosis, the findings do suggest that direct brain measures might help to predict the future development of autism symptoms in infants as young as six months.

“Our findings demonstrate for the first time that direct measures of brain functioning during the first year of life associate with a later diagnosis of autism – well before the emergence of behavioural symptoms,” said Professor Mark Johnson, MRC Scientist and head of the Centre for Brain and Cognitive Development at Birkbeck, University of London.

“Our findings demonstrate for the first time that direct measures of brain functioning during the first year of life associate with a later diagnosis of autism – well before the emergence of behavioural symptoms,” said Professor Mark Johnson, MRC Scientist and head of the Centre for Brain and Cognitive Development at Birkbeck, University of London.

I have not seen nor read the paper yet. The abstract is available and they give “highlights” of the study:

Highlights
Family risk for autism confers subtle differences in brain function in infants
Atypical ERPs in infants when viewing eye gaze data associates with later autism diagnosis
Robust prediction of autism will require an understanding of risk and protective factors

and the summary:

Summary

Autism spectrum disorders (henceforth autism) are diagnosed in around 1% of the population [1]. Familial liability confers risk for a broad spectrum of difficulties including the broader autism phenotype (BAP) [2,3]. There are currently no reliable predictors of autism in infancy, but characteristic behaviors emerge during the second year, enabling diagnosis after this age [4,5]. Because indicators of brain functioning may be sensitive predictors, and atypical eye contact is characteristic of the syndrome [6,7,8,9] and the BAP [10,11], we examined whether neural sensitivity to eye gaze during infancy is associated with later autism outcomes [12,13]. We undertook a prospective longitudinal study of infants with and without familial risk for autism. At 6–10 months, we recorded infants’ event-related potentials (ERPs) in response to viewing faces with eye gaze directed toward versus away from the infant [14]. Longitudinal analyses showed that characteristics of ERP components evoked in response to dynamic eye gaze shifts during infancy were associated with autism diagnosed at 36 months. ERP responses to eye gaze may help characterize developmental processes that lead to later emerging autism. Findings also elucidate the mechanisms driving the development of the social brain in infancy.

Here is Figure 1 from the article, which I admit in this version is too small to be very illustrative:

But the figure caption gives some more details about the actual study.

Figure 1. Association between Infant ERPs in Response to Eye Gaze and Autism Outcomes(A) Participating families first visited the lab when their infants were 6–10 months of age. Electrophysiological recording was done during this visit. Infants were prepared for the EEG session.(B) Electrophysiological response to gaze shifts over occipitotemporal channels.(C) Around 2 and 3 years of age, the same infants were tested by an independent team using several measures including the ADOS, a semistructured observational measure of autism-related characteristics. Based on information from all visits, combined with expert clinical judgment, infants in the at-risk group were classified as having ASD or not.(D) Controlling for age at the first visit, significant condition × risk-group interactions were observed for the amplitude of the P400 [F(1,92) = 6.7, p = 0.01]; planned post hoc tests focused on within-group difference between response to direct versus averted gaze controlling for age at baseline and developmental level at 36 months. Estimated mean differences between responses to gaze toward versus away are displayed for each group (standard error bars are displayed). Findings suggest that differentiation between gaze toward versus away was reliable in the both the control group (p < 0.001) and the at-risk without ASD group (p = 0.04). By contrast, the at-risk group that developed ASD showed no differentiation (p = 0.67) nor did the subgroup that developed early and persistent symptoms (p = 0.27). Findings from static face and face versus noise contrasts are presented in Figure S1 and Table S1.

The DSM 5 and autism

24 Jan

A recent article in the New York Times has sparked a renewed heated discussion on the topic of Autism and how the DSM 5 may change how it is diagnosed. The Times article, New Definition of Autism Will Exclude Many, Study Suggests, has already been discussed here at Left Brain/Right Brain.

At that time there was a paragraph from the Times which was troubling:

The changes would narrow the diagnosis so much that it could effectively end the autism surge, said Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine and an author of the new analysis of the proposal. “We would nip it in the bud.”

Unfortunately we don’t have the full quote from Prof. Volkmar. The whole thing seemed a little strange. As noted on the Embargo Watch blog, this was based on a talk given at a small conference and a single slide in that talk.
In my opinion, it looks like the Times ran with a story that they shouldn’t have, and may have made it appear more troubling than it really is.

Troubling in this respect: the point of the DSM in my opinion is not to try to manage one way or another the number of identified autistics. It should be to accurately identify autistics.

A later article in the Times had this paragraph, which is again bothersome:

“We have to make sure not everybody who is a little odd gets a diagnosis of autism or Asperger disorder,” said Dr. David J. Kupfer, a professor of psychiatry at the University of Pittsburgh and chairman of the task force making the revisions, which are still subject to change. “It involves a use of treatment resources. It becomes a cost issue.”

I don’t see it as the place of the DSM 5 committee to either manage the “surge” in autism diagnoses or to manage a “cost issue”. And while the Times may be overplaying this, we need to focus on the fact that accuracy is far more important than social engineering here. Frankly I don’t think that everyone who is a “a little odd gets a diagnosis of autism or Asperger disorder” now. If there is a problem with over diagnosis, I’d like to see it backed up with data. Especially in the adult population, which is likely very much under diagnosed.

There are two valuable outcomes to accurately diagnosing autism. First and foremost is in providing services. In this respect it is better to cast the net a little wide rather than miss people who are in need. I don’t think we are there yet. As of now there may be an under count of autistic students based on socioeconomic status:

If the SES gradient found in this study is due only to ascertainment bias, this would imply that there are significant SES disparities in access to diagnostic and other services for children with autism in communities across the United States. It also would imply that the current estimate of ASD prevalence might be substantially undercounted, with children of low and medium SES being under-identified and underserved relative to those with high SES.

Girls may be identified later than boys:

Girls, especially those without cognitive impairment, may be formally identified at a later age than boys. This may delay referral for early intervention. Community education efforts should alert clinicians and parents to the potential of ASDs in boys and girls.

Autism is underdiagnosed in racial/ethnic minorities.

Significant racial/ethnic disparities exist in the recognition of ASD. For some children in some racial/ethnic groups, the presence of intellectual disability may affect professionals’ further assessment of developmental delay. Our findings suggest the need for continued professional education related to the heterogeneity of the presentation of ASD.

And this ignores the huge elephant in the room: the fact that autism is under diagnosed in adults. When an autism prevalence study was conducted in the UK, adults identified in the diagnostic assessment part of the study were previously undiagnosed. Studies in the U.S. have identified undiagnosed autistics within institutions–a place where the individuals are under close medical supervision. Is it really a stretch to believe that the low prevalence in adults involves a lot of under counting?

There is the medical diagnosis of autism and there are legal definitions of autism. Consider California. The California Department of Developmental Services has as part of its charter providing services to autistics within the state. All well and good, but California used the same rules from about 1985 to about 2007. They waited over 10 years after the DSM-IV was implemented to revise their rules. One result of this was that individuals with autism spectrum disorder diagnoses such as PDD-NOS and Asperger syndrome were considered to be not autistic. They didn’t have “autism” as their diagnosis.

In California schools, autism is not defined by the DSM or any other medical diagnosis. It is defined legally:

(a) For purposes of this chapter, a “pupil with autism” is
a pupil who exhibits autistic-like behaviors, including, but not
limited to, any of the following behaviors, or any combination
thereof:
(1) An inability to use oral language for appropriate
communication.
(2) A history of extreme withdrawal or of relating to people
inappropriately, and continued impairment in social interaction from
infancy through early childhood.
(3) An obsession to maintain sameness.
(4) Extreme preoccupation with objects, inappropriate use of
objects, or both.
(5) Extreme resistance to controls.
(6) A display of peculiar motoric mannerisms and motility
patterns.
(7) Self-stimulating, ritualistic behavior.
(b) The definition of “pupil with autism” in subdivision (a) shall
not apply for purposes of the determination of eligibility for
services pursuant to the Lanterman Developmental Disabilities
Services Act (Division 4.5 (commencing with Section 4500) of the
Welfare and Institutions Code).

An individual without an autism (or ASD) diagnosis can be considered a “pupil with autism” (although this can be a battle). Likewise, an individual with an autism (or ASD) diagnosis can be not considered a “pupil with autism). Changing the DSM criteria will not make a difference in the educational definition. (edit to add–should have stressed “at first”. The educational definition will likely be reviewed and possibly changed after the DSM 5 is published)

An autism diagnosis is not a key to services, which is what the quotes from Professors Volkmar and Kupfer suggest (again, I think the Times has overplayed this). An autism diagnosis can often be, however, an important first step. Again in a world where legal definitions define developmental disability, having the right diagnosis can be the difference between starting the fight and being knocked out in the first round. In California the CDDS serves individuals with:

mental retardation, cerebral palsy, epilepsy, and autism. This term shall also include disabling conditions found to be closely related to mental retardation or to require treatment similar to that required for individuals with mental retardation, but shall not include other handicapping conditions that are solely physical in nature.

That last category is supposed to leave the door open to other developmental disabilities, but in practice it is a difficult argument to make. Even autism is not a key. I recall one autistic who advocated for others in the community telling me of someone who rode a bike to the DDS office for the interview. He was told he was denied because he could ride a bike. Sure its an anecdote. But at this point we don’t have a lot of data on adult autistics. And that should be a warning sign that we are under serving a big segment of the population.

And we are not talking about those “mildly affected”. I can speak from experience that the CDDS has tried to keep out one individual, my kid, someone who *clearly* meets multiple criteria.

With all due respect, I see that the DSM 5 committee holds a public trust. We need diagnostic criteria that are accurate, not designed by committee to solve problems like “cost” and a “surge” in autism.

With all this said, this latest surge in the discussion was sparked by a talk given at a conference. It is preliminary and there is a lager study in the works. There’s a reason why work like this is supposed to stay out of the public eye until complete. It appears that the author himself, Prof. Volkmar, broke the embargo on his own work, sort of. This is discussed at Embargo Watch as Study about potential effects of new autism definition spotlights the Ingelfinger Rule. Prof. Volkmar gave a single slide at a small conference and had the permission of his editor to do so. The Times picked this up and has now sparked a great fear of the DSM 5 within a large segment of the online autism communities.

The Omnibus Autism Proceeding: effectively over

21 Jan

The Omnibus Autism Proceeding (OAP) was held in the U.S. Court of Federal Claims to group the large number of claims filed involving autism and vaccines. The Docket was opened on July 3, 2002, nearly 10 years ago. The last entry was placed 1 year ago. Since then many cases have been dismissed. About half the cases are left to hear, but the fact that the two causation theories presented (that the MMR vaccine causes autism and that Thimerosal causes autism) were both found to have no merit (“not even close” one special master put it) and no new theory is proposed by the Petitioners’ Steering Committee (the attorneys who presented the case for the petitioners) makes it clear that the group claim, the omnibus, is effectively over.

That is not to say that other claims are not proceeding through the court, or that new cases will not be presented. There is at least one case pursuing the idea of mitochondrial dysfunction and autism, as with the Hannah Poling case. ([edit to add–the case ongoing, which was briefly closed, is not the Hannah Poling case. See the comments below). The case was actually dismissed for lack of action by the petitioners but the special master allowed it to continue again).

Looking back, the Omnibus peaked in 2003 when 2,437 cases were filed (close to 1/2 of the total that would eventually be filed).

Trying to avoid bullying: like a groundhog trying to run from its shadow

21 Jan

Kids get bullied, and special needs kids even more so. Doesn’t make it right. But what happens when people are so proud of it that they want it recorded to video and posted to the web?

That’s what happens in this video. A group of kids are bullying an autistic kid. Only one throws the punch, but another is ready and waiting with a cell phone camera to record the event.

http://www.abc2news.com/video/videoplayer.swf?dppversion=16926

Kaleb wants to put the bullying behind him but, as he says, “It’s like a groundhog trying to run from its shadow.’ The bully has been charged with 2nd degree assault.

← Older Entries
Newer Entries →